Silas's Story: Cerebral Palsy
Patient Story Highlights
- Silas, a six-year-old boy with spastic quadriplegic cerebral palsy and neuronal migration disorder, needed a hip operation to prevent displacement, cartilage loss, pain and early-onset arthritis.
- His parents consulted the Johns Hopkins All Children's Orthopaedic Program for a second opinion as they had previously experienced success with Silas' therapy at Shriners Hospital in Tampa.
- His orthopaedic surgeon, Dr. Daniel Bland, was capable of carrying out surgery on both hips at once, which was less risky and less traumatic for Silas, who faces a difficult recovery period.
At 6 years old, Silas has faced more challenges than most adults, including spastic quadriplegic cerebral palsy and neuronal migration disorder, so when his hips started slipping from their joints—despite the minimal walking he was even able to do—his parents knew it was time to find the right surgeon for him.
It was a challenge coming from a rural area outside Pensacola, Florida, but they’d had some success with his therapy at Shriners Hospital in Tampa, so when they were told he was ready for surgery, they decided to consult the nearby Johns Hopkins All Children’s Orthopaedic Program for a second opinion.
“My entire family and a few friends all drove down from Pensacola with us to meet Dr. Daniel Bland for the first time, including a service dog that belongs to our friend, so I’m sure poor Dr. Bland thought he was stepping into an intervention or something,” laughs Silas’s mom, Tamara, “but he was very patient with us and he took the time to call us the next day to ask if we had more questions, which meant a lot to us.”
Bland, M.D., Silas’ orthopaedic surgeon, was first sent Silas’ medical records. He saw enough to know he could improve those hips—and more important—help prevent what was coming, including full displacement, loss of cartilage, pain and early-onset arthritis.
The Orthopaedic and Scoliosis surgery program at Johns Hopkins All Children’s has ranked among the top orthopaedics programs in the country by U.S. News & World Report four of the past five years. It offers a full-service team that provides comprehensive care plans customized to fit each child’s needs.
“It’s a tough operation with a long and difficult recovery—and sometimes that’s hard to explain to parents who haven’t yet faced what was coming down the road for Silas, but I felt strongly that we had the opportunity for success,” Bland explains. “I try to customize each situation to the family and meet their needs. In Silas’ case, he lives seven hours away and having a surgeon who is capable and willing to do surgery on both hips at once was a real benefit to them. It’s also a benefit to Silas, who only faces the risk of one surgery verses two, less recovery time, less risk, ideally less blood loss, etc.” Bland was confident he could offer that solution to Silas’ family, knowing the next few months were going to be difficult for everyone as he recovers completely immobile in a full-body cast.
Because it wasn’t an emergency situation, Bland encouraged the family to go home and think about it, weigh the pros and cons and determine what was best for them. He also wanted them to ask questions and feel free to get to know him better. “I consider my patients and families a long-term relationship. I stick with them, I follow up on his progression, even from half a state away. We also recognize that, considering his age and the 10 years of growing he has ahead of him, there is a chance he will need a future surgery so I want to stay involved in his progress even while much of his everyday care and therapy are happening in his hometown.”
Silas had his surgery in September with a follow-up six weeks later, but the family sent photos and videos of his progress and when he developed a skin condition from the cast, Bland recommended they have a small portion of it removed locally to ease the irritation.
“The level of care we received at Johns Hopkins All Children’s before, during and after his surgery just blew us away,” Tamara recalls. “It’s amazing. If we could convince our family to move with us, we’d relocate in a heartbeat to be closer to that hospital and that care.”
Tamara was aware that the first few months would be rough, but it still took her by surprise. She appreciated that Bland kept in touch and was willing to answer any questions any time.
“I try to prepare parents that it’s a major surgery and it keeps kids immobile for a long period of time,” Bland explains. “They can regress in that time, but over the long haul I think they will find that his improvement, along with the suffering he is now able to avoid because they went through this experience, will be worth all of their hard work and commitment.”
Though Silas is non-verbal, his family has a special communication with each other that Bland could only marvel at. “I always try to speak directly to my patients and explain what is about to happen in a language they can understand and, while Silas has a cognitive understanding, his mom did a great job of helping him interpret what to expect. I’m very proud of this family for doing this for their son.” After a few months back home, the family is now starting to see some impressive improvements and they are thrilled with the results.
Of course, some of the credit goes to his baby sister who Silas constantly wants to impress with his abilities.
“He is taking real steps now. He’s a completely different child. He got to kick a ball for the first time. We are really starting to see the fruits of this decision. We are so grateful for the experience we had at this hospital. They cared so much about Silas and about us. Listened to us and answered our concerns. They even helped us arrange our home health care all the way up in Pensacola. They called and fought to get us what we needed to properly care for him. We can’t say enough about the team at this hospital,” Tamara concludes.
Bland, meanwhile, is thrilled to see that this family made it through the hard part, and he can consider Silas another success. “Some of these families are dealing with so much, and if my team can offer them some form of hope, and show them that we have the confidence in our abilities to make things happen that will improve the everyday lives of their children, that’s just a win-win for everyone. It makes me proud to do what I do.”
And now Silas, hundreds of miles away, is proudly showing anyone who will watch, the fantastic, pain-free steps he is able to take with his newly fashioned hips.
Daniel Bland, M.D., is on the medical staff of Johns Hopkins All Children’s Hospital, Inc. (“JHACH”), but is an independent practitioner who is not an employee or agent of JHACH.